Resources and support for families dealing with cancer and serious illness

wiredwolf47 said:Hmm... yeah, I guess I have to weigh in too. Major props and a huge hello to Angela Wright for starting this forum (and thanks for the support).
I also want to point out that beyond the psychological support—which neither patients nor their families can easily find anywhere—even primary healthcare isn't functioning the way it should. A patient doesn't feel like anyone is actually looking out for them with any sense of conscience. After my mom had surgery for colon cancer, she was sent home to recover way earlier than necessary (simply because hospitals are fighting over bed space), leaving her with nobody at home who knew how to properly dress her wounds. The wound got infected, and she could have died before the actual fight against the disease even really started. She was eventually rushed back to our local county hospital, where they've been struggling to get the infection under control for three weeks now.
Of course, if every doctor who touched her were handed a fancy gift or a fat envelope... hmm... that’s not how it’s supposed to work, but everyone fights for their own loved ones.

When I asked if she could see a hospital psychiatrist because she was completely losing her spirit, they told me that wasn't their recommendation.
So what is a person supposed to do???

God, it drives me crazy seeing medical professionals push that kind of "that's not our recommendation" attitude. That exact mindset is a massive reason why treatment fails; they look at your mother as just a "colon case" rather than a woman who happens to be sick, specifically in her colon.
A human being is one single, global organism. When someone is stressed, for example, they might get a headache from the tension. Instead of the doctor helping the patient eliminate the source of that stress, they just hammer them with antidepressants and painkillers.
Sometimes I feel like grabbing a shotgun and taking a shot at those narrow-minded medical heads.😈 😈 🙂

Honestly, everyone—why all this fuss? Just save your strength; you’re going to need it regardless.
My doctor back in Jordan once told me that the world didn't start because of my dad, and it certainly isn't going to end because of him...😕
Don't waste your energy or your nerves on the comments from people around you. It’s perfectly fine to take medical advice, but—in my opinion—it’s also right to go above and beyond what they recommend for your loved ones, especially when it comes to stabilizing a patient's mental state. I truly believe the family holds the most influence here, since they are the ones living with the person and knowing them best.
So, wiredwolf47—you aren't exactly meddling in specific clinical procedures, so they shouldn't have any reason to push back—if you think a psychologist will help her, then GO FOR IT. 👍

Hey there!
Congrats on starting this thread—honestly, everything feels a lot lighter when you realize you aren't fighting this alone. I don't have a ton to add since so much great info has already been shared here... I'll just say that a family member of mine is currently battling a soft tissue tumor. All the treatments she’s had so far have basically been experimental, so nothing is set in stone yet. We are just staying incredibly hopeful because my sister is holding up so well; she's actually tougher than all of us combined! She’s our rock, and her two-year-old daughter is her absolute motivation. For those of you who haven't lost your faith in God, I’d highly recommend checking out this one priest who draws tens of thousands of believers to his gatherings. He really helps people find peace (at least, that's what everyone testifies), even though my sister visited him and unfortunately saw the tumor return. But hey, if anyone wants more details, feel free to shoot me a private message. Sending love to you all—my best advice? Don't lose faith in the survivors or in the possibility of healing for your loved ones.👍

It’s honestly such a bummer that we don't really have a multidisciplinary approach for cancer patients here in the States, and honestly, I doubt things are going to change anytime soon. Getting psychiatric or psychological support is totally standard in some clinics, but trying to find that kind of care through our system? Yeah, pretty much a lost cause. Since I work in healthcare myself, I know that even if people actually wanted to make it happen, putting it into practice is a massive uphill battle.

Charles Edwards8 said:It’s tragic, but we just don't have a multidisciplinary approach to cancer patients here in the States, and honestly, I doubt things will change anytime soon. While some clinics offer psychiatric or psychological support, trying to find that kind of care elsewhere is basically a lost cause. Since I work in healthcare myself, I know that even if the desire were there, actually implementing it in practice is incredibly difficult.

When people actually want to fix something, nothing is too hard! Saying otherwise is just a pathetic excuse to avoid making changes. If doctors were simply given a protocol on how to break news—how to tell someone they are gravely ill in a way that is psychologically digestible—things would be infinitely better.
I can't help but think back to how my dad was treated. Right after Mom's surgery, this doctor just threw it in his face, completely cold, without an ounce of empathy or a kind word. He just told him she wasn't going to make it and had maybe a year left. It makes me sick. My dad was so shaken he collapsed right into his chair. Later, he had to drive home in that state. He has heart issues, and he could have easily had a heart attack from the shock. As if the doctor cared; he just checked a box and moved on. In that moment, the doctor killed any will my father had to fight for Mom's life, because according to him, "it's all completely futile and pointless because the statistics say so."... If that doctor had just said, "The situation is what it is, these are the symptoms, these are the statistics, and I am so incredibly sorry. But please, don't lose hope. Stay strong and do everything you can; miracles happen, and why couldn't your wife be one of them? We will do absolutely everything within the power of modern medicine. Are you okay? Do you need us to call someone to help you get home?" Is that really so damn hard? How much willpower does it take to say that?! How much money does it cost to show a single grain of humanity and compassion?! It would have meant the world to my dad, and maybe he would be fighting harder for her recovery today if that doctor hadn't crushed his spirit right at the start. And my dad isn't the only one; ask anyone on this forum and they'll tell you they've had a similar, if not identical, experience. Doctors are so obsessed with being freaking right; it feeds their medical ego!
Fine, go ahead—take the text I just wrote, you miserable doctors, and recite it to people when you have to deliver bad news. Even if you feel like you're lying, it'll be much easier for people to face the truth! Sometimes people need time to process things, so try dosing your "medical truth" a little more carefully!😠
p.s. Sorry for the harsh language, but it's just a reflection of how deeply I feel about this issue.

Ivanica, you hit the nail on the head👍
Trying to lecture doctors about being rude is pretty much a lost cause.
It’s not even really about their medical training; it’s just basic human decency and how people talk to one another.
But if we want things to actually change, we as patients need to hold our ground. From the very first meeting, we shouldn't let any doctor develop a "God complex." I actually struggled with this myself when I first got sick, but my husband—who’s also in healthcare, though he hasn't worked in the field for over 12 years now—really helped me figure out how to handle the doctor-patient dynamic.
First off, doctors should never be allowed to hide behind mysteries or throw statistics in your face. They take piles of data—which isn't always even accurate—and use it to build a psychological upper hand. It sends this clear message that they know everything and we, the patients or their families, are just here to sit and listen.
When a doctor speaks openly and publicly the way they spoke to your dad, it’s honestly shocking. At that point, it’s not even about empathy or being kind; it’s just a straight-up professional failure.
That said, we can't just generalize and say "all doctors and medical staff are the same."
Throughout my own illness, and from my 24 years working in ICU, I’ve seen some incredibly heavy situations. Sadly, there were times when I had to tell the "truth," even when I wasn't in a position to predict how much time someone had left by citing stats. I always tried to stay professional. Sometimes, when I say "professional," it might come off as "cold" to people who are extra sensitive in those moments, but it really makes you wonder where the line is for doctors and medical staff regarding how much emotion they should show.

"Here's the situation, it involves this and that, the stats look like this, I am so sorry, but please don't lose hope, stay strong and do everything you can, miracles happen, why couldn't your wife be the one, we will do absolutely everything medicine allows? Are you okay, do you need us to call someone to drive you home?..."

I totally agree with most of what you said, but I can't get behind a doctor talking about miracles—especially implying that maybe one of us or our loved ones could be "the one." And then there's that whole bit about the statistics.

Look, miracles do happen—spontaneous healings are well-known—but let's be real. We shouldn't expect a doctor to talk about miracles because they'll lose all credibility. It makes them look unprofessional and unreliable.

Don't be mad that I'm rephrasing your sentence, but personally, I would have written it like this:

The situation is such-and-such, it involves this and that (the situation or the illness? I'd probably go with the illness), I'm sorry, but we will do everything possible within the scope of medicine.
And definitely include that last part: Are you okay, do you need us to call someone to help you get home?

I mostly agree with what you're saying, but I can't get behind the idea that a doctor or any medical professional should be talking about miracles—especially when they start speculating on why one of us or our loved ones wouldn't be the next miracle case. And then there's that whole bit about statistics.

Miracles definitely happen; spontaneous healings are well-known. But let’s be realistic here: we shouldn't expect a doctor to preach about miracles. If they do, they risk losing all their credibility, looking unreliable and unprofessional.

Actually, he wouldn't lose credibility; if anything, he'd gain it in my eyes. Doctors are human beings and scientists, but even as both, there are plenty of things that remain a mystery. To me, he is what he is: first a man, then a doctor, but he isn't God. He doesn't carry divine authority, so he shouldn't be making bold prognostications like "you have one year left." Whether he's a believer or an atheist, he has to leave room for God or nature to pull a reversal. As a professional, his job is to provide insight and present the statistics, not make those kinds of calls.
What does being "realistic" actually mean? Does it mean clinging desperately to statistics just to preserve professional standing and insisting that a situation is hopeless? If that's the case, then what's the point of medicine or doctors at all? Objectively speaking, we're all going to die eventually anyway. Miracles—medical or otherwise—don't just happen in some parallel universe; they happen every single day right here on this planet. Maybe they don't happen as often as we'd like them to, but they exist. You, me, my mom—we all have the right to believe in that, and no one should be allowed to stomp on that faith right at the beginning. Hope should be the very last thing to die.
What are the odds of someone falling 15,000 feet without a parachute and walking away with nothing more than a broken leg and some broken ribs? A miracle? Is it medical or is it from God? Do you think he cares about the technicalities? He's alive!!

Ivanic, remember when the doctor told your dad Mom might only have a year left? Well, here’s what my neurologist said when he looked at her brain CT: "This looks like glioblastoma" (I had zero clue what that even was back then). He said he’d call a top neurosurgeon just to see if it made any sense to put her through surgery just to squeeze out a few extra weeks. A FEW WEEKS!!! Those words still ring in my ears... and that was back in May 2006, and Mom is still here, thank God! Then, after the surgery and biopsy, that same neurologist tells us she’s got maybe three months left!!! I can still see me and my brother walking out of that hospital, hugging each other and crying like babies. Later, when we finally met the oncologist, he dropped the statistics on us—saying that in the best-case scenario, she’d have two years. So, here’s the thing: those stats are based on a specific group of patients taking a specific drug during a specific window of time. They aren't meant to cover every single person on this planet fighting this disease. You can find those numbers online in two seconds; we don't need an oncologist throwing them in our faces. What I really want to know is whether there’s ever been any systematic tracking of cancer patients here in the US—like actual long-term data on survival rates and stuff. I’m pretty sure there hasn't been. To make a long story short—since I’m already rambling—when I tearfully asked the oncologist if *really* nobody had ever survived this, he told me about a guy they once showed him on an X-ray who supposedly lived fifteen years after a glioblastoma diagnosis. People, just knowing that someone actually beat the odds gave me the strength to fight. That’s what doctors should be doing—not talking about miracles, just stating the facts. And the fact is, people *do* survive the worst cancers. But they can't tell us that because they simply don't know... since we don't track this kind of long-term data on a national level. Hope I didn't ramble too much... heads up!

Ivanic, you saw what I meant when I mentioned that "God complex" some doctors have. I totally agree—giving out any kind of prognosis, whether it's six months, a year, or even just a few weeks like Nicole Edwards76 mentioned, is completely inappropriate. Honestly, it feels unprofessional and just plain inhumane. Regarding the stats, our neighbors in Canada have a super organized cancer registry that tracks everything down to the tiniest detail. Unfortunately, here in the States, our data is all over the place; it’s partially tracked, but nothing is centralized or kept up to date. We don't really have a single, unified national cancer registry, and it’ll probably be a long time before we get one that works. So, when a doctor cites statistics, it really just comes down to how much training and education they actually have. I saw this firsthand when my husband and I sat down with a pathologist who happens to be our neighbor. We asked him how many sarcomas he’d seen throughout his career and how many pathologists in the US actually specialize exclusively in this field. His answer was incredibly vague. He said he’d seen a few (very few osteosarcomas), and that Professor Devcic, who was an expert in the field, is already retired. Sadly, it feels like there's barely anyone left specializing in sarcomas right now (and honestly, I won't even go into the error rates for PhD sarcomas because the percentage is shockingly high). Anyway, that's the deal with the statistics. At the end of the day, hope always dies last. It’s up to us and our loved ones to stay fully mobilized and fight these illnesses with everything we've got. Having the right psychological approach and solid support from those close to us is absolutely vital.

I have no idea where the post I wrote yesterday went.😲

Nicole Edwards76 said:IVANICA, the doctor told your dad she only had a year left. You want to know what my neurologist said to me when he looked at my brain CT? He said, "This looks like glioblastoma (I had zero clue what that was), so I’m going to call a top neurosurgeon to see if it even makes sense to put her through surgery just to squeeze out a few more weeks." A FEW WEEKS!!! Those words are still ringing in my ears (that was back in May 2006, and thank God!, my mom is still alive). Then, after the surgery and biopsy, that same neurologist tells us she has three months left!!! I remember how my brother and I walked out of that hospital, hugged each other, and just sobbed like it was raining. Later, when we finally met the oncologist, he threw statistics at us suggesting that, in the best-case scenario, she might live two years. Here’s the thing: statistics are based on a specific group of patients who took a specific drug over a certain period; they aren't a universal rule for every single person fighting this disease. You can find those numbers online easily; we don't need an oncologist to shove them in our faces. What I really wonder is whether there has ever been any kind of systematic tracking for cancer patients here in the US—actual data collection like survival rates and five-year statistics. I’m convinced there hasn't been. To cut a long story short—since I’m rambling and losing my train of thought—when I was sobbing and asking the oncologist if *really* nobody ever survives, he told me that they once showed him a guy where it was claimed he lived fifteen years after a glioblastoma diagnosis. People, just knowing that someone actually survived gave me the strength to fight. That is what doctors should be doing—not talking about miracles, but simply stating the facts: the fact is that people *do* survive the worst cancers. However, they can't tell us that because they simply don't know; there isn't any consistent, long-term national statistical tracking happening. I hope I didn't overwhelm you. Hang in there!

I completely agree with everything you wrote, and you didn't overwhelm me at all. It isn't even about whether the statistics are true; it's about how they are delivered. Because of the way it was handled, it took me six months to wrap my head around it and figure out how to tackle the problem effectively. But that's me—maybe I'm weak, maybe I'm strong... but what about everyone else? Not everyone has the same nerves or the same mental capacity. I always saw my father as a brave, pragmatic, realistic, and optimistic man. Now, I look at him and I don't even recognize him. He is completely crushed and lost. He can't function in even the simplest daily tasks. He is so traumatized. I think that trauma would have been much smaller, or at least easier to handle, if the doctor had served the news differently. Instead, I'm left with a mother who is immobile and a father who can't function without constant prompting (mostly from me), which requires an incredible amount of energy. Not to mention that every single responsibility we used to split between three people has now fallen squarely on my shoulders, on top of this whole situation with my mom.

I honestly don't know how much longer my mind can take this, let alone my body. I'm 30, I'm unemployed, and the longer I delay trying to conceive, the lower my chances become because of my own illness. And then yesterday, while I was bathing my mother, watching her struggle to even hold her head up, seeing how much pain she's in, how hard she breathes, how her entire body feels like a massive burden... for the first time, I truly and sincerely wished for my mother to die, because anything would be better than this. I love her so much that I feel her suffering in my own bones.
I’m being bombarded with questions about whether there’s any point in trying more medications just to extend her life—which really just means extending the agony. Let’s be real: she’s never going to be mobile or independent again. In the best-case scenario, she stays exactly where she is now, which is a level of existence far below anything resembling a decent quality of life. I am sacrificing everything I have for her, but at what point does this sacrifice become toxic for me? I still need to build a life and start my own family. Am I being selfish?
The last few days have been brutal. I just lost an old aunt who was a massive pillar of support and comfort for me. My mom was incredibly close to her; she was basically like a second mother to her. Now, Mom is spiraling into deep depression, and I’m right there in the trenches with her. I know things fluctuate, but I haven't felt this low since the day she first got the diagnosis. Oh God, please give me the strength to get through this.😢

Hang in there, Ivanica, we're all rooting for you!
Stay strong...

Angela Wright,

You truly are such a selfless soul, always offering warmth and kind words to everyone here, and especially to your own mother and father. Please, never let yourself feel any guilt about wanting to start a family of your own or simply needing a little peace and quiet. I truly believe your boundless capacity for love will serve as a testament to God, and I hope He blesses you with children who will one day care for you with that very same devotion.

Wishing you the very best,

Carol Ramirez

Ivanica, you are definitely not being selfish! You’ve given so much to people who don't even know you, let alone to your own mom. Sometimes we just hit a wall and need to pull back and focus on ourselves. We aren't robots...
I have this friend whose mother fought cancer for three years before finally losing the battle. This friend literally gave her mom everything she possibly could. All her time (and she has a family of her own to look after), all her love, all her energy, and all her money. She’s drowning in debt because she was paying out of pocket for chemo treatments that weren't covered by Medicare. But then, one day, she called me from the hospital after sitting by her mom's side for days, watching her suffer, and she told me she was just waiting for it to be over...
Ivanica, what doesn't break us makes us stronger, and no matter how hard this hits, you're going to come out on the other side tougher than ever.
keep your head up 🙂

Ivanica

Even though I’m fighting my own battle right now, and I’ve got nothing but unconditional love from my family, I honestly just ADMIRE you.
I really hope you can stay this brave, but please, try to find some kind of balance—don't let your incredible selflessness and big heart end up costing you your health.

Dear Ivanica, 😘
thank you for speaking up about those deeply hidden things we all carry within us—the ones we think we're alone in feeling.
Isn't it incredible how much we all become one in moments like these?
For instance, I’ve been telling myself that it was somehow wrong to go out to dinner, enjoy an intimate life (to actually have sex!), visit the hair salon, watch a silly movie, chat about trivial nonsense, or even crave a specific color of clothing (especially that last one!!!)—not to mention the whole wedding hunt, since the venue and band are already booked for June.
Then, someone dear to me—someone with a wealth of life experience—explained that my self-destructive behavior wasn't helping anyone. It really hit home: if I allow myself a little breathing room once in a while, I'll be a happier person. And that isn't a sin! Changing my hair, buying new shoes, grabbing drinks with friends, or having sex—none of that means I love my dad any less or care for him any less.
Of course, I'm not suggesting I just "laugh off" the seriousness of everything—but it occurs to me that I should try to have a child regardless of whether there will be a wedding on the scheduled date (I won't cancel it for now), because life moves forward. These situations we find ourselves in could last long enough that we eventually look back and wonder where we were and what we did for ourselves during all this time...
And I won't even get started on the importance of maintaining our own mental and physical health—which we are going to need so badly later in life...
... nor on the fact that despite everything, we must have faith that God will always find a way for each of us...

Dear Ivanica,
No one can do more for someone else than what you are doing for your mom.
Your selflessness, your grit, and your courage serve as an example to all of us facing our own impossible situations.
Don't let despair take hold. No matter how brutal this fight gets or how it ultimately turns out, your life is still ahead of you. Keep your chin up, and have faith in your future. One day, your own family will look back and be incredibly proud to have had someone like you by their side.

Dear friends, I want to thank you all from the bottom of my heart for the incredibly warm support you've shown me. Honestly, I'm moved to tears. It means the world to know I can be here for you, but please believe me when I say that you have been an endless source of strength for me, too!
Thank you once again!
😘

Ivanic, maybe you should pick a fight with someone (maybe a doctor). Just kidding.
Let me tell you a little story;
A father was watching his young son try to move a massive flower vase. The little guy was straining, grunting, and pushing with everything he had, but he couldn't budge it an inch.
"Did you use all your strength?" the father asked him.
"I did," the boy replied.
"No, you didn't," the father shot back, "because you didn't call on me to help you!"
Asking for help means using "all" your strength.
I don't want you to think I'm preaching to you—this approach worked for me, and it still does.

ruggednomad182 said:Ivanica, maybe you should try picking a fight with someone—maybe one of those doctors. Just kidding.
Let me tell you a little story;
A father was watching his young son struggle to move a massive flower vase. The little guy was straining, grunting, and putting everything he had into it, but he couldn't budge it an inch.
"Did you use all your strength?" the father asked him.
"I did," the boy replied.
"No, you didn't," the father countered, "because you didn't call on me to help you!"
Prayer means tapping into "all" of your strength.
I don't want you to think I'm preaching to you; this is just what has worked for me, and what continues to work.

I'm praying🙂
I simply tripped over a stone on my own path, but my friends are right here by my side, helping me back up and helping me carry my cross.
I'm feeling a bit better today, and Grandpa really lifted my spirits with some good news.🙂

I haven't seen much of you guys lately. I'm hoping it's just because this weather has been absolutely miserable. What's the word? How is everyone doing?🙂